Jasper’s Medical Journey- Searching For Answers

Our 7-year-old son Jasper’s life changed overnight, and right now we are desperately searching for answers.

About a month ago, we went to refill one of Jasper’s prescriptions and were told there was a shortage. Because of that, he was temporarily switched onto a medication he had taken in the past that never worked well for him.

Almost immediately after starting it, he began having unusual eye movements and tic-like symptoms. Thankfully those stopped after about a week, and we hoped things were improving.

Then, about a month later, the pharmacy was finally able to get Jasper’s regular medication back in stock. Less than 20 hours after restarting it, everything changed.

Jasper woke up with severe neck and head tics unlike anything we had ever seen before.

This wasn’t normal. This wasn’t minor. And this was not something he had ever experienced before in his life.

Within 24 hours of being admitted to the hospital, Jasper suddenly began projectile vomiting in his sleep and would barely wake up during it. He had no fever, no cold symptoms, no flu symptoms, and no known infection. He was extremely exhausted, barely responsive throughout the day, and vomiting throughout the night out of nowhere.

I stayed awake terrified he would choke in his sleep.

Since then, Jasper has undergone an overwhelming amount of testing including:

-Bloodwork

-CT scan

-MRI

-Ultrasound

-Two X-rays

-Four different heart tests

-EEG brain wave testing

-Lumbar puncture / spinal fluid testing

The results have left us with even more questions.

One heart test showed a swollen aorta and a valve that was not fully closing.

The EEG brain wave test showed an abnormality on one section of one side of his brain, but no one has been able to clearly explain what that means or what is causing it.

The hardest part is that the EEG was performed while Jasper was asleep, so the doctors never actually captured the tic-like movements happening during the episodes themselves — the very thing we are trying to understand.

Right now, Jasper is experiencing these movements roughly 90% of the time.

He never had tics before. He never had neurological symptoms before. This all appeared suddenly and aggressively overnight.

Doctors have ruled out infections including meningitis after spinal fluid testing and 48-hour cultures all came back negative.

Yet despite all of these tests, we still have no answers.

We’ve been told that multiple specialists from multiple hospitals are reviewing Jasper’s case, but no one can tell us exactly what is happening or why.

Some of the remaining test results could still take weeks to come back, and it feels like VGH may be running out of options for further testing or more specialized care.

At this point, I believe we may need to travel to BC Children’s Hospital in hopes of getting deeper answers and access to more specialized neurological care.

The only major change before all of this began was the medication switch.

Less than a day later, our world completely changed.

As a parent, it is terrifying being told there are abnormalities but not being given answers. It is terrifying watching your child go through this and feeling helpless. And honestly, I am scared to go home without knowing what is happening to my little boy.

The support from friends, family, and the automotive community has already meant more to us than words can explain. Seeing people show up for Jasper with care packages, model cars, love, and encouragement reminded us that we are not alone in this fight.

Any donations will help support:

-Travel costs for medical appointments and potential trips to BC Children’s Hospital

-Meals and accommodations during hospital stays

-Lost work time while caring for Jasper

-Medical-related expenses

Comfort items and support for -Jasper during this difficult journey

Most importantly, your support helps remind Jasper that an entire community is standing behind him.

Thank you for reading our story, for sharing it, and for keeping Jasper in your thoughts.

We are praying for answers.